Method Matters: Comparing Cancer-Related Adjustment of Siblings to Norms and Well-matched Peers.

OBJECTIVE: The purpose of this study was to better understand conflicting findings in the literature regarding the adjustment of siblings of children with cancer by examining, in a single sample, differences in patterns of results as a function of reporter and comparator used (i.e., population norms, demographically matched classmates). METHOD: Self- and parent-report standardized measures of depression, anxiety, and behavioral problems were collected for 67 siblings and 67 demographically matched classmates. Comparisons were made to norms and controls. RESULTS: Siblings consistently demonstrated poorer psychosocial functioning than their demographically matched peers across all measures but their scores did not differ from norms. A significantly greater percentage of siblings fell outside the normal range than that expected in the general population for parent-reported total and internalizing problems, but not for externalizing problems or the self-report measures. CONCLUSIONS: Findings regarding the psychological adjustment of siblings of children with cancer differ according to the research methods used. It is important to use rigorous methods such as demographically matched peer comparisons when investigating the impact of childhood cancer on siblings.

Working towards inclusive and equitable trauma treatment guidelines: a child-centered reflection.

Clinical practice guidelines, such as those focusing on traumatic stress treatment, can play an important role in promoting inclusion and equity. Based on a review of 14 international trauma treatment guidance documents that explicitly mentioned children, we reflect on two areas in which these guidelines can become more inclusive and equitable; a) representation of children's cultural background and b) children's opportunity to have their voice heard. While a few guidelines mentioned that treatment should be tailored to children's cultural needs, there was little guidance on how this could be done. Moreover, there still appears to be a strong white Western lens across all stages of producing and evaluating the international evidence base. The available documentation also suggested that no young people under the age of 18 had been consulted in the guideline development processes. To contribute to inclusion and equity, we suggest five elements for future national guideline development endeavours. Promoting research and guideline development with, by, and for currently under-represented communities should be a high priority for our field. Our national, regional and global professional associations are in an excellent position to (continue to) stimulate conversation and action in this domain.

Las guías de práctica clínica, como las que se centran en el tratamiento del estrés traumático, pueden desempeñar un papel importante en la promoción de la inclusión y la equidad. Basados en una revisión de 14 documentos internacionales de orientación sobre el tratamiento del trauma que mencionaban explícitamente a los niños, reflexionamos sobre dos áreas en las que estas guías pueden ser más inclusivas y equitativas; a) representación de los antecedentes culturales de los niños y b) oportunidad de los niños para que se escuche su voz. Si bien en algunas pautas se mencionó que el tratamiento debería adaptarse a las necesidades culturales de los niños, hubo poca orientación sobre cómo hacerlo. Más aún, todavía parece haber una fuerte perspectiva occidental blanca en todas las etapas de producción y evaluación de la base de evidencia internacional. Las directrices disponibles también sugirieron que no se había consultado a ningún joven menor de 18 años en sus procesos de elaboración. Para contribuir a la inclusión y la equidad, sugerimos cinco elementos para futuros esfuerzos de desarrollo de directrices nacionales. Promover la investigación y el desarrollo de directrices con, por y para las comunidades actualmente subrepresentadas debe ser una alta prioridad para nuestro campo. Nuestras asociaciones profesionales nacionales, regionales y mundiales se encuentran en una excelente posición para (continuar) estimulando la conversación y la acción en este ámbito.

Listening to Family Life After Serious Pediatric Injury: A Study of Four Cases.

Following a serious child injury, the entire family can be affected. Gaining an understanding of family support, interactions, and stress levels can help clinicians tailor treatment. Presently, these factors are assessed mainly via self-reports and structured observations. We aimed to explore the value of naturalistic observation of postinjury parent-child interactions, in order to highlight how clinicians might use these data in their practice. Our qualitative study involved an in-depth analysis of four cases from the Ear for Recovery project, against the backdrop of the larger sample's characteristics. Children who had been hospitalized with a serious injury wore the Electronically Activated Recorder (EAR). Over a two-day period postdischarge, the EAR recorded 30-second audio "snippets" every 5 minutes. Families also completed self-report measures on family functioning, child stress and social support, parent stress, optimism, and self-efficacy. For each case, two coders independently used an ethnographic method, integrating self-report measures, family and injury characteristics, audio recordings, and transcripts to mimic integration of information within clinical practice. The coders then reached consensus on the main themes for each case through discussion. Families showed substantial variation in their communication in terms of content, tone, and frequency, including moments of conflict, humor, and injury-related conversations. We explored how these recorded interactions converged with and diverged from the self-report data. The EAR provided an opportunity for rich descriptions of individual families' communication and activities, yielding potential clinical information that may be otherwise difficult or impractical to obtain.

Después de una lesión pediátrica grave, toda la familia puede quedar afectada. Llegar a comprender el apoyo, las interacciones y los niveles de estrés de la familia puede ayudar a los profesionales a personalizar el tratamiento. Actualmente, estos factores se evalúan principalmente mediante autoinformes y observaciones estructuradas. Nuestra finalidad fue analizar el valor de la observación naturalista de las interacciones entre padres e hijos después de una lesión pediátrica a fin de destacar cómo los profesionales podrían usar estos datos en su práctica. Nuestro estudio cualitativo implicó un análisis profundo de cuatro casos del proyecto Ear for Recovery en el marco de las características de la muestra más grande. Los niños que habían sido hospitalizados con una lesión grave usaron la grabadora activada electrónicamente (Electronically Activated Recorder, EAR). Durante un periodo de dos días posteriores al alta, la EAR grabó fragmentos de audio de 30 segundos cada 5 minutos. Las familias también completaron medidas de autoinforme sobre funcionamiento familiar, estrés infantil y apoyo social, estrés de los padres, optimismo y autoeficacia. Para cada caso, dos codificadores usaron independientemente un método etnográfico, integrando medidas de autoinforme, características de la familia y la lesión, grabaciones de audio y transcripciones para imitar la integración de la información dentro de la práctica clínica. Los codificadores luego se pusieron de acuerdo sobre los temas principales de cada caso mediante una charla. Las familias demostraron una variación considerable en su comunicación en cuanto al contenido, al tono y a la frecuencia, incluidos los momentos de conflicto, de humor y las conversaciones relacionadas con la lesión. Analizamos cómo estas interacciones grabadas coincidieron y se diferenciaron de los datos autoinformados. La EAR brindó la oportunidad de obtener descripciones detalladas de la comunicación y las actividades de cada familia en particular, y facilitó posible información clínica que de lo contrario puede ser difícil o impráctico obtener.

Dysfunctional posttraumatic cognitions, posttraumatic stress and depression in children and adolescents exposed to trauma: a network analysis.

BACKGROUND: The latest version of the International Classification of Diseases (ICD-11) proposes a posttraumatic stress disorder (PTSD) diagnosis reduced to its core symptoms within the symptom clusters re-experiencing, avoidance and hyperarousal. Since children and adolescents often show a variety of internalizing and externalizing symptoms in the aftermath of traumatic events, the question arises whether such a conceptualization of the PTSD diagnosis is supported in children and adolescents. Furthermore, although dysfunctional posttraumatic cognitions (PTCs) appear to play an important role in the development and persistence of PTSD in children and adolescents, their function within diagnostic frameworks requires clarification. METHODS: We compiled a large international data set of 2,313 children and adolescents aged 6 to 18 years exposed to trauma and calculated a network model including dysfunctional PTCs, PTSD core symptoms and depression symptoms. Central items and relations between constructs were investigated. RESULTS: The PTSD re-experiencing symptoms strong or overwhelming emotions and strong physical sensations and the depression symptom difficulty concentrating emerged as most central. Items from the same construct were more strongly connected with each other than with items from the other constructs. Dysfunctional PTCs were not more strongly connected to core PTSD symptoms than to depression symptoms. CONCLUSIONS: Our findings provide support that a PTSD diagnosis reduced to its core symptoms could help to disentangle PTSD, depression and dysfunctional PTCs. Using longitudinal data and complementing between-subject with within-subject analyses might provide further insight into the relationship between dysfunctional PTCs, PTSD and depression.

Development and Evaluation of the Thinking About Recovery Scale: Measure of Parent Posttraumatic Cognitions Following Children's Exposure to Trauma.

Researchers have recently suggested that parent posttraumatic appraisals potentially contribute to the development of posttraumatic stress in both parents and children following children's exposure to trauma. However, a single-instrument, multidimensional measure of parent posttraumatic cognitions as they relate to their child's recovery has yet to be operationalized. This study described the development and evaluation of a parent-report questionnaire of parent posttraumatic cognitions, designed to be used after a child's exposure to trauma. We generated an initial pool of items in reference to existing theories and subjected this list to an iterative process of item writing and revision. Items were subjected to expert review to maximize construct validity. The 33-item Thinking About Recovery Scale (TARS), which measures three domains (My child has been permanently damaged; The world is dangerous for my child; Parents should always promote avoidance) demonstrated good internal consistency (Cronbach's α = .74-88) and convergent validity (r 2 range = .08-.40) when piloted in a sample of 116 parents of children who had been exposed to a serious accidental injury. The TARS augments the available literature by providing a brief measure of parent posttraumatic cognitions, an area which is currently understudied in childhood posttraumatic stress and could have broad clinical and research use.

Measurement properties of instruments that assess participation in young people with autism spectrum disorder: a systematic review.

AIM: To systematically review the measurement properties of instruments assessing participation in young people with autism spectrum disorder (ASD). METHOD: A search was performed in MEDLINE, PsycINFO, and PubMed combining three constructs ('ASD', 'test of participation', 'measurement properties'). Results were restricted to articles including people aged 6 to 29 years. The 2539 identified articles were independently screened by two reviewers. For the included articles, data were extracted using standard forms and their risk of bias was assessed. RESULTS: Nine studies (8 cross-sectional) met the inclusion criteria, providing information on seven different instruments. The total sample included 634 participants, with sex available for 600 (males=494; females=106) and age available for 570, with mean age for these participants 140.58 months (SD=9.11; range=36-624). Included instruments were the school function assessment, vocational index, children's assessment of participation and enjoyment/preferences for activities of children, experience sampling method, Pediatric Evaluation of Disability Inventory, Computer Adaptive Test, adolescent and young adult activity card sort, and Patient-Reported Outcomes Measurement Information System parent-proxy peer relationships. Seven studies assessed reliability and validity; good properties were reported for half of the instruments considered. Most studies (n=6) had high risk of bias. Overall the quality of the evidence for each tool was limited. INTERPRETATION: Validation of these instruments, or others that comprehensively assess participation, is needed. Future studies should follow recommended methodological standards. WHAT THIS PAPER ADDS: Seven instruments have been used to assess participation in young people with autism. One instrument, with excellent measurement properties in one study, does not comprehensively assess participation. Studies of three instruments that incorporate a more comprehensive assessment of participation have methodological limitations. Overall, limited evidence exists regarding measurement properties of participation assessments for young people with autism.

Injury talk: spontaneous parent-child conversations in the aftermath of a potentially traumatic event.

BACKGROUND: While talking about traumatic experiences is considered central to psychological recovery, little is known about how these conversations occur in daily life. OBJECTIVE: We investigated spontaneous injury talk among parents and children in the aftermath of a child's hospitalisation due to physical trauma, and its relationship with children's socioemotional functioning. METHODS: In a prospective naturalistic observation study, we audio-sampled the daily life of 71 families with the Electronically Activated Recorder after their child (3-16 years old) was discharged from hospital. We collected close to 20 000 snippets of audio information, which were double-coded for conversation characteristics, and measured children's socioemotional functioning with the Strengths and Difficulties Questionnaire (SDQ) at 6 weeks and 3 months postinjury. FINDINGS: The children were involved in injury talk for, on average, 46 min/day, 9 min of which referred to emotions. Children had significantly more injury conversations with their mothers than with their fathers. The tone of injury conversations was significantly more positive than that of non-injury conversations. More direct injury talk was associated with fewer problems on the emotion subscale of the SDQ at 3 months. Other associations between aspects of injury talk and children's socioemotional functioning were mostly non-significant, although they appeared to be stronger at 3 months than at 6 weeks. CONCLUSIONS: Families spontaneously talked about the injury and associated issues for about the same amount of time per day as a therapist might within a session (a 'therapy hour'). CLINICAL IMPLICATIONS: Making full use of naturally occurring injury talk may be a valuable direction for parent and family-focused postinjury interventions. However, the study design prevents causal inference, and further exploration is warranted.

Topical Review: Families Coping With Child Trauma: A Naturalistic Observation Methodology.

OBJECTIVE: To introduce a novel, naturalistic observational methodology (the Electronically Activated Recorder; EAR) as an opportunity to better understand the central role of the family environment in children's recovery from trauma. METHODS: Discussion of current research methods and a systematic literature review of EAR studies on health and well-being. RESULTS: Surveys, experience sampling, and the EAR method each provide different opportunities and challenges for studying family interactions. We identified 17 articles describing relevant EAR studies. These investigated questions of emotional well-being, communicative behaviors, and interpersonal relationships, predominantly in adults. 5 articles reported innovative research in children, triangulating EAR-observed behavioral data (e.g., on child conflict at home) with neuroendocrine assay, sociodemographic information, and parent report. Finally, we discussed psychometric, practical, and ethical considerations for conducting EAR research with children and families. CONCLUSIONS: Naturalistic observation methods such as the EAR have potential for pediatric psychology studies regarding trauma and the family environment.

Ear for recovery: protocol for a prospective study on parent-child communication and psychological recovery after paediatric injury.

INTRODUCTION: One in six children who have been admitted to hospital with an injury develop persistent stress symptoms that put their development at risk. Parents play a crucial role in children's psychological recovery, however, it is unknown how specific parenting behaviours can help or hinder. We aim to describe the nature and quantity of parent-child communication after a child has been injured, and to examine how these interactions are related to children's psychological recovery. METHODS AND ANALYSIS: We are conducting a prospective observational study among children aged 3-16 years, who have been admitted to a tertiary children's hospital with a serious injury. Data collection involves a naturalistic observation of spontaneous, everyday parent-child communication at home, shortly after discharge, and an assessment of children's psychological recovery at 6 weeks and 3 months post-injury. Main analyses comprise descriptive statistics, cluster analysis and analyses of variance. ETHICS AND DISSEMINATION: This study has been approved by the Human Research Ethics Committee of the Royal Children's Hospital Melbourne (33103) and Monash University Human Research Ethics Committee (CF13/2515-2013001322). We aim to disseminate the findings through international peer-reviewed journals, international conferences and social media. Participants will be sent a summary of the overall study findings.

The social functioning of siblings of children with cancer: a multi-informant investigation.

OBJECTIVE: This study examined social functioning among siblings of children with cancer. METHOD: A case-control design was applied to school- and home-based data from multiple informants (peers, teachers, mothers, and self). Social reputation and peer acceptance within the classroom was compared for 87 siblings (aged 8-16 years) and 256 demographically matched peers. Self-perceptions of peer relationships and parent-reported social competence were examined among 67 siblings and 67 matched comparisons. RESULTS: Peer reports (N = 1,633) indicated no differences between siblings and comparisons for social reputation, number of friendships, reciprocated friendships, or peer acceptance. Self-reported prosocial behavior and teacher-reported likability were higher for siblings than comparisons. Self-reported loneliness, friendship quality, and perceived social support did not differ between groups. Mothers reported less involvement in activities and poorer school performance for siblings than comparisons. CONCLUSIONS: Peer relationships of siblings of children with cancer are similar to classmates, though they experience small decrements in activity participation and school performance.

Psychosocial care for seriously injured children and their families: a qualitative study among emergency department nurses and physicians.

BACKGROUND: Approximately one in five children who sustain a serious injury develops persistent stress symptoms. Emergency Department nurses and physicians have a pivotal role in psychosocial care for seriously injured children. However, little is known about staff's views on this role. OBJECTIVE: Our aim was to investigate Emergency Department staff's views on psychosocial care for seriously injured children. METHODS: We conducted semi-structured interviews with 20 nurses and physicians working in an Australian Paediatric Emergency Department. We used purposive sampling to obtain a variety of views. The interviews were transcribed verbatim and major themes were derived in line with the summative analysis method. We also mapped participants' strategies for child and family support on the eight principles of Psychological First Aid (PFA). RESULTS: Five overarching themes emerged: (1) staff find psychosocial issues important but focus on physical care; (2) staff are aware of individual differences but have contrasting views on vulnerability; (3) parents have a central role; (4) staff use a variety of psychosocial strategies to support children, based on instinct and experience but not training; and (5) staff have individually different wishes regarding staff- and self-care. Staff elaborated most on strategies related to the PFA elements 'contact and engagement', 'stabilization', 'connection with social supports' and least on 'informing about coping'. CONCLUSIONS: The strong notion of individual differences in views suggests a need for training in psychosocial care for injured children and their families. In addition, further research on paediatric traumatic stress and psychosocial care in the ED will help to overcome the current paucity of the literature. Finally, a system of peer support may accommodate wishes regarding staff care.

Prevalence and predictors of parental grief and depression after the death of a child from cancer.

PURPOSE: To investigate patterns of grief and depression in a sample of parents whose child had died of cancer, and to examine factors related to burden of illness and end-of-life care as potential predictors of parental grief and depression outcomes. METHODS: Fifty-eight parents completed standardized self-report questionnaires measuring prolonged grief disorder (Inventory of Complicated Grief-Revised [ICG-R]) and depression (Beck Depression Inventory-Second Edition [BDI-II]) and participated in structured interviews designed to elicit their perceptions of their child's end-of-life care and burden of illness. The majority of participants were mothers (84%) and the mean length of time since child death was 4.5 (standard deviation [SD] = 2.4) years (range, 1.0-9.8 years). RESULTS: Rates of prolonged grief disorder (PGD) were similar to those reported in other bereaved populations (10.3%); however, 41% of parents met diagnostic criteria for grief-related separation distress. Twenty-two percent of parents reported clinically significant depressive symptoms. Time since death and parental perception of the oncologist's care predicted parental grief symptoms but not depressive symptoms. Perceptions of the child's quality of life during the last month, preparedness for the child's death, and economic hardship also predicted grief and depression outcomes. CONCLUSIONS: A minority of parents met criteria for PGD and depression, however, almost half the sample was experiencing significant separation distress associated with persistent longing and yearning for their child. Time since death is a significant predictor of parental psychological distress. This study also highlights the importance of end-of-life factors in parents' long-term adjustment and the need for optimal palliative care to ensure the best possible outcomes for parents.

Talking about parts of a past experience: The impact of discussion style and event structure on memory for discussed and nondiscussed information.

This experiment examined the impact of selective postevent discussion of high- and low-elaborative styles on 5- and 6-year-olds' (N = 47) memory for discussed and nondiscussed aspects of a staged event ("Visiting the Pirate"). The event contained both logically and arbitrarily connected scenes. Discussion was spaced over 3 days, and memory was assessed 1 day later. Compared with a no-discussion condition, memory for discussed information was enhanced after high- but not low-elaborative discussion for both logically and arbitrarily connected scenes. For arbitrarily connected scenes, memory for nondiscussed aspects was impaired relative to the no-discussion condition, with the degree of impairment being equal after high- and low-elaborative discussion. In contrast, for logically connected scenes, memory for nondiscussed information was not impaired after discussion of either style.

Selective postevent review and children's memory for nonreviewed materials.

Two experiments investigated the impact of selective postevent questioning on children's memory for nonreviewed materials. In both experiments, children participated in a series of novel activities. Children in the selective-review condition were subsequently questioned about half of these and comparisons were made to memory in a no-review condition. In Experiment 1, participants were 60 5- and 9-year-olds. For children in both age groups, memory for nonreviewed activities was impaired 20 min later in free recall. In Experiment 2, participants were 60 5-year-olds. Memory impairment was found following a 1-day delay after spaced review (three sessions over 3 days) but not after massed review (three sessions on 1 day). In both experiments, memory impairment was absent when specific retrieval cues were provided. The possible mechanisms underlying these findings and their potential practical implications are discussed.